Wednesday, July 15, 2015

This winter, I read the memoir written by Stephen Hawking's ex-wife, Jane, about their life together, their family, and the progressions of both his disease, and his fame. It was fascinating, not only because he is a fascinating man with an amazing brain - and illness history - being one of the few people who has survived so long with ALS, but also because of her, and her story. I ended up reading it from the perspective of a caregiver because so much of their story was about what she gave up to care for him, and it mirrored so much of what I see with caregivers and the elderly today.

By the time they married, he was already suffering the effects of his illness, and she took him on knowing it. However, at the time, doctors thought that he would only live a handful of years and die young, so I imagine she thought it was worth the extra effort of a husband with such a serious illness - wanting to have time with him even though it wouldn't be long. Instead, he ended up living, for forty years, with all the attendant difficulties, symptoms, and struggles of his illness - and she became his caregiver.

It broke my heart to read about how much she took on, and how long she managed their lives and his care, without much help. People assumed she was coping, and didn't offer help - even his own family didn't think she needed assistance; social structures assumed they had money because of his fame, and wouldn't help very much; Hawking himself refused to accept care from anyone else except her, and was in denial about how much care he actually required; and she had to fight for every bit of assistance and money they received. She ended up almost destroying her own health for his care.

Granted, this all started back in the sixties and seventies, before there were laws about disability access, and much support for caregivers. However, it struck me that things don't seem to have changed that much, even though we're in a century of miracles - the Internet, people living in space, instant connection around the world, and other technological marvels. We still live in a culture of assuming the family will care for the ill and elderly without needing outside help; expecting people to spend their last dollar before social help will kick in; and, it seems, willfully ignoring the massive challenges and struggles that caregivers face. It is unfortunate that things have changed so little in the last fifty years.

I do see changes that are being made, programs that are coming on line to help caregivers, organizations formed to fight for them, and provide services. The effort is just so woefully behind the problem, though, and I still see caregivers going under. We need more stories like this, to show in plain language the toll that caregiving takes on a family: policy makers and politicians need to hear these stories, so tell yours whenever you have a chance. Go to www.lbda.org and tell them your story - they'd love to hear it, and they will use it to help make as many changes as they can.

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Teepa Snow

Teepa is the reigning queen of how to interact with those who have dementia and make your life as a caregiver easier and smoother. More importantly, she teaches us how to give our care receiver the best, most comfortable, life possible.

LBD Caregiver Link

LBD Caregiver Link

Toll-free LBD Caregiver Link – 800.539.9767

LBD families and caregivers can connect directly on a regional basis, through the LBD Caregiver Link, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:

vListening compassionately and confidentially to the challenges of LBD families and sharing their own personal experience with LBD

vOffering emotional support

vReferring families to additional LBDA programs and services as appropriate for their needs.

While Lewy Buddies are not able to provide medical advice and are not medical professionals, they are typically well informed about LBD through their personal experiences and volunteer training with LBDA. They may also be able to help identify information and community resources concerning the diagnosis and care of a person with Lewy body Dementia.

When calling or emailing the LBD Caregiver Link, you will speak with an experienced caregiver who can provide information on LBD and who can also share their personal experience and compassion.Please leave a message and an LBDA volunteer will return your call within 24-48 hours.

"Our deepest calling is to grow into our own authentic self-hood, whether or not it conforms to some image of who we ought to be. As we do so, we will not only find the joy that every human being seeks -- we will also find our path of authentic service in the world." Parker J. Palmer

FEATURING:

Toll-Free Hot Line at the AFA (Alzheimer's Foundation of America)

1-866-232-8484

Compassion. Knowledge. Care. That's what AFA's toll-free hot line delivers. When you reach out to us, licensed social workers and other professionals knowledgeable about Alzheimer's disease and related illnesses will answer your call. They will respond to your questions and direct you to appropriate local resources to meet your needs. No question is too small; no concern is too insignificant.

AFA's toll-free hot line provides information, counseling by licensed social workers and referrals to community resources across the nation.

The hot line operates during regular business hours—Monday through Friday, 9 am to 5 pm (ET). During these hours, social workers are available by phone, as well as via Skype and live chat; to connect via Skype and live chat, click here. At all other times, please leave a message and we will return your call. To ask a question via e-mail, click here. If your situation is an emergency, please dial 911 when appropriate.

***************************Care Connection Teleconferences with the Alzheimer's Foundation of America.

Care Connection Teleconference

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Full Life Care

http://www.fulllifecare.org/

Welcome to Full Life Care – formerly ElderHealth Northwest. Full Life helps adults of all ages with chronic illnesses, physical or developmental disabilities. We are a not-for-profit organization dedicated to improving people’s lives and supporting caregivers. Since the 1970s, we have helped thousands of individuals preserve their dignity and avoid living in a nursing home or in isolation.

This is a great organization. My Dad visited them for years and got a lot of support through their Men's Support Group. I highly recommend them for help and support of your loved one.

*******************************Check out Seattle's Grief center if you or someone you know needs a little extra support during a tough time. http://www.healingcenterseattle.com/ *******************************What is the Helpline?

The Alzheimer's Association's Helpline is a toll-free number that you can call 24-hours a day, 7 days a week to get information about Alzheimer's disease. Through our National office, we have the ability to serve individuals in 140 different languages by accessing translation services.

Call 800.272.3900 to speak with a trained Helpline specialist who will provide emotional support and appropriate referrals to local resources in the 23 counties served by the Association. All calls are confidential.

About Me

I'm a writer, caregiver advocate, hospice/bereavement counselor and care manager for my father, who suffers from Lewy Body Dementia. I think it's important to talk about caregiving from my point of view as a member of Generation X. I also think it's important to spread the word on what Lewy Body dementia is, and how to deal with it effectively.
Some names, dates, details have been altered due to memory discrepancies, to maintain privacy, and to ensure narrative flow.